Category Archives: Uncategorized

Doctor/patient relationship questions


So, if you’ve been reading for awhile, you know that I’m involved with several organizations.

I’m working on something with #jointdecisions right now and would love your feedback regarding your doctor/patient relationship.  More details to come soon! But please give me some feedback on the below questions!
Whah has worked for you in building a relationship with your rheum, feeling confident that you made the right choice in switching and also how you sustain and grow that relationship with your rheum over time?

Show me your teeth!


I’ve always had pretty good teeth.  <knock on wood.> The picture above is from last May…where at the age of 35, I finally got my first cavity.

The amusement I had over numb, crazy mouth selfies definitely made up for my laughing gas request being denied. 

While I may not post as often as I should, I am constantly reading other blogs and various health publications.  In some ways, it’s a great thing.  I learn so much! In other ways, it is a terrible terrible thing because I self diagnose with the worst case scenario, work myself up into a tizzy, and in at least this most recent case, avoid getting something looked at for awhile because ***if the doctor doesn’t say it’s an issue, then it is not yet real. ***

Because, you know, good logic.  So rational.  

So what happened?

I’ve read a lot about the relationship between RA and dental issues.  Instead of trying to explain the technicalities, know that there seems to be a pretty strong relationship and follow the below links that are actually scholarly or at the very least peer reviewed.

So…a few months ago, I noticed that my upper left gums were swollen.  I thought nothing of it…as this happened once before and when I went to the dentist, I was diagnosed with eating pizza that was too hot.  

Seriously.  The dentist laughed and said ‘honey, you must have been starving. Let your food cool down some!’

I let it go because I figured I had simply burnt myself again.  It went away after a few days.  And then it came back.  Away. Back. Away. Back.  

On round 3, I finally took a good look in my mouth with a mirror and FREAKED out.  Part of my left gum had receded and was ‘clefted.’

I immediately thought to my reading.  I also thought of my friend who recently had a gum graft that she best described as ‘agony.’

I stupidly thought to myself that I should just avoid it.  I didn’t want to admit that RA was wreaking havoc on a new place.  I certainly didn’t want to have a painful procedure.  And if it doesn’t hurt, then why address it?

I know. The stupid stings!

Fast forward to this past Tuesday.  I bit funny into a carrot and lost a filling in the other side of my mouth.  There was no way I could not address that, so off to the dentist I went.

Not only were they able to fix the tooth, they were able to squeeze in a cleaning as well as examine the gum recession.

The verdict: my gun recession is NOT RA related.  It is very much the result of aggressive brushing with stiff bristles and not helped by nighttime teeth grinding.  

I can’t control or make excuses for the grinding but I stand by rough brushing: this gal likes to be clean!

While I probably won’t have the gum ‘un-recess,’ the remaining tissue is thick and healthy. No need to refer to a periodontist at this time and certainly no need for a gum graft. Switching to a soft bristle toothbrush, being less forceful with brushing, and wearing an oh-so-sexy mouth guard at night should keep it from progressing. 

Moral here? There are several.

1. Don’t assume that RA causes everything.

2. Don’t put off something that should be looked at because you’re afraid of the answer.

3. Dental care is very important, especially for RA patients.

4. I realized that I haven’t seen many articles or blogs discussing RA dental care.  

5. Even though my issues wound up not being RA related, this is yet another aspect of the patient experience we should at least be aware of.

To maintain continued gum health as well as to address some tartar issues, my dentist has recommended a periodontal cleaning where they numb you up and clean below the gum line.  This would mean that all future cleanings would be a bit different read: more invasive and more expensive.

I’m considering it as it’s nice to feel proactive for once about health vs reactive.

What do you think? Anyone else have experience with this type of cleaning? I’d love to hear your experiences!

A day in the life…


It’s been awhile since I documented this so here we go!

6:30am- Alarm #1 goes off. BAM, SLAP. Alarm #1 is silenced.  I roll over and pretend that it didn’t happen.

6:39- Alarm #1 snooze feature activates. I sit up long enough to slap it off the nightstand, lean over, pick it up and turn it off.

6:45- Alarm #2 (cell phone) goes off.  This one is easy.  I only have to roll over and tap it off.

7am- Alarm #3 (the TV) turns on.  The intro to the Today Show filters through the room.  But honestly, I don’t even budge because half the time, I don’t even hear it.

7:15- Alarm #2 snooze function activates.  Again, cell phone so tap off.

7:16- I don’t even have to open my eyes to feel the step, step, step, step, CAT IN MY FACE.  This wakes me up. Because I would never smack, slap or tap the furchild.

7:16-7:20- petting a purring cat, checking email, wishing I could spend the whole day in bed with her.

7:20- Get out of bed, stretch, assess how I’m feeling.  Today, not so bad. Wrists are a little sore but it could be worse.  

7:20-7:50- Dry and flat iron hair.  Wash face. Brush teeth. Contacts. Makeup. Jewelry.  Daily battle to find something in your closet that you feel confidant in.  This sometimes results in half naked trips downstairs to the laundry room.

7:50- Final assessment in mirror.  Stop in bathroom, take morning meds that you put on the counter the previous night.  Put back in bin because this is the only way you can remember that you have indeed taken them. 

7:50-8am- Make breakfast shake and coffee.  Feed cat.  Chug shake.  Chug coffee.  Make more coffee for travel mug. Pull precooked Tupperware for lunch- today is stir fried cabbage.  Grab a package of almonds, an orange and precut celery (by me, I’m cheap, not bought this way) for snacks.

8-8:30am: drive to work.

8:30-12pm- work! I try to schedule myself in 30 increments for both time management purposes as well as making time to get up, walk around, and stretch.

12pm- LUNCH.  Except…I don’t want my cabbage stir fry anymore because I want to take a walk.  Walk to deli, order chicken salad on mixed greens, walk back.  Leave cabbage in fridge for lunch tomorrow. Pat self on back for time savings on that move!

1pm- 5pm- work! Again, scheduling myself in 30 minute increments.  

4:45pm- receive text from friends re happy hour plans.  My best laid plans for gym/yoga are immediately jettisoned. 

5:15- 7pm- hang with friends. (Sometimes I drive home first and walk to where we are meeting.  Depends on where we meet, how I’m feeling and if the temperature is ungodly.)

7pm- 9pm- home/dinner/home practice yoga or free weights or walk or piyo.

9pm- shower, feed cat.  Take evening meds and put morning meds on counter so that they are not forgotten. Stretch if I haven’t done yoga. 

9pm-I fall asleep- fave part of day! Get in bed with furchild, Netflix.

Rinse, repeat.

Living with RA= so wild and so glamorous!

Nutrition: cleaning up the taco salad


So I don’t want to post just to write a post…and for the most part, I’m doing well.  But I also don’t want to not post.

So would you rather see cat pictures???


Or hear about some of the dumb things I’ve done that my rheumy would probably cringe at…

Or perhaps my space is best used by sharing some of the things that make a big difference in my personal health?

Option 1 is totally adorable.  Option 2 is…well…what it is.  Note for my rheumy: my sliding buddy in the video is an ER doctor = I was *totally* supervised.  Option 3 is probably what you want to hear about most though. 
Not that I intend to stop with the cat pics nor do I intend to stop playing in bounce house/water slides meant for children. 

For me, one of the things most crucial in maintaining my health is eating correctly. The downfall is that so many of the foods I like are so bad!  

I’m very sensitive to a variety of foods and, as I’ve mentioned before, worked with a nutritionist to identify and eliminate them.  Tops of my list are salt, processed sugars, soy, gluten, and dairy. 

So how do you still eat your faves and avoid these things? I have been trying to clean up my favorite dishes, one step at a time.

On the menu today, taco salad.

I make all my meals for the week on Sunday’s and freeze the ones for the latter part of the week.

It doesn’t take as long as you would think.

This morning, I got up, made a cup of coffee and threw 2 lbs of chicken in the crockpot with a jar of tomatillo salsa.  (Sugar free). Low for 9 hrs.  When it’s done, I’ll shred it.  I’ll put some on salads. The rest I’ll eat by itself because the flavor is that good. 

I chopped 2 green peppers and 1 onion. I browned a pound of lean ground beef and added the peppers and onions.  

While the peppers and onions cooked, I chopped three zucchini. I put them on a baking sheet, sprayed them with olive oil, a teeny tiny bit of sea salt and popped them in the oven. 20 minutes at 400.

Note: this is how I drizzle olive oil.  It’s easier for my hands and wrists to hold as well as not dump a flood of olive oil.  Available from the travel section in almost every store for roughly $1.

Once the zucchini was in the oven, the onions and peppers were cooked.  I added 1 can of Rotel and 1/3 cup of water.  I also added 2 tablespoons of ‘Organic Mexican Seasoning’ that I got at Whole Foods.  It’s salt free and probably pretty easy to make on your own…but it’s Sunday and I’m lazy!

Here are the ingredients:

I mixed everything together and covered it to cook for 10 minutes.

Instead of chips, I serve it on a bed of spinach or kale.  I topped it with some fresh cilantro from my porch.

I made cup of coffee #2….oh, I need to not lie.  Do over: I made cup of coffee #3 and stuffed my face!

When I was done, the zucchini were too.

I roast all my vegetables this way. Asparagus, brussel sprouts, artichokes, you name it. 

Later today, I’ll spend probably 5 minutes shredding the chicken.  I also have fresh spinach that I steam as a side for variety.  If I get tired of the entrees, I always have chicken sausage on hand.

All in all, I spent 45 minutes in the kitchen, most of it waiting on stuff to finish and indulging my coffee addiction.  Outside of assembling and heating meals for the rest of the week, I won’t cook again until next Sunday. 

Now…cup of coffee #4 and hopefully a good walk if it cools off some!

Note: I was not compensated for or asked directly or indirectly  to mention any of the products above. 

Shots, shots, shots


Yes, the wild child in me is singing that god awful rap song right now.  It is awful…but dang it is catchy!

Anyways, one of the questions I am asked the most is how in the world can you give yourself shots???

Some back story: I grew up terrified of shots.  I had to get a tetanus shot right before I went to college and I *may* have slightly panicked about it.  At 18, almost 19 years old.

My sophomore year of college, I wound up requiring allergy shots.  I learned that if you are miserable enough, shots are no biggie.  I did the allergy testing, reacted to everything, and scheduled what they termed ‘Rush immunotherapy’ to jumpstart getting myself better.

Rush immunotherapy required me to be at the doctors office for 8 full hrs.  I knew I would be receiving a shot every half hour for the full day, but didn’t realize the other things they would do.  I got there that morning and the first thing they did was start an IV in my left hand.  I asked what it was for- it was in case I went into full anaphylaxis and my heart stopped beating.  They inserted the IV and capped it off…and the whole day I kept staring at it, hoping it would never be used.  

It was not used, but I totally used it to get bumped to the head of the cashier line I n the hospital cafeteria because they all assumed I was there for chemo.

(Going to hell.)

Anyways, I did 5 years of weekly allergy shots.  

You would’ve thought that would’ve desensitized me to getting/giving shots but when I was put on Humira after being diagnosed, I waited a month to give myself that first shot.  

It wasn’t a real shot persay- it was a preloaded epipen type shot.  But it intimidated the hell out of me.  

One of my good friends found this out and organized my ‘give a shot, take a shot’ intervention.  Simply put, she showed up with a bottle of coconut rum that I like, and wouldn’t allow me to partake until I gave myself that first shot.

It ended up being perfect and hilarious.  She knows me well and knew I needed humor to get through it so she called the whole event like a wrestling match.

‘And AJ is unsheathing her secret weapon from its plastic casing.  The ref verified that it is not expired and therefore eligible to used to beat the bloody hell out of her opponent.  AJ is out of her corner but look at her opponent cowering. Look at her technique as she expertly jams her weapon into her enemy and presses that button. BAM- opponent is down for 1…2…3…4…5….And we have a victor with AJ!!!!’

For real. It happened. 

I have awesome friends. My A team always knows what I need.

The first time is always the hardest.  And my buddy made it so funny that I just didn’t care.  The shot of rum I took after was my prize.

Pretty sure doctors everywhere are cringing.

Anyways. So I did several years of Humira shots.  Then I moved onto Orencia infusions.  I switched to Orencia injections simply because it was easier on my schedule.

The Orencia injections were my first experience with a non epipen injection.  They were preloaded…I just had to do the stick.

The first one I did, I had to do with the nurse at my doctors office to show I knew how to do it.  I’d never done that before and I think I scared her at first.

I was all Pulp Fiction- holding it 3 feet above my leg and preparing to ram it.  I learned that day that for subq shots, you hold it gently on the surface of your skin.  You hold it like a pen, and gently insert it at a 45 degree angle.

Subq shots are boring.  I wanted to go all John Travolta on it! Complete with music.  But whatever.

Because I’m asked so frequently what it’s like, I made a quick video showing me giving myself my weekly vitamin B injection.

This is a supplement  I take and I find the injectable version is better quality for me than pills.  This is an intramuscular injection- 90 degrees rather than 45.  This is one that I also have to draw up myself, another new skill I have.  Certainly, the most difficult injection I have to give myself.

And guess what? It’s not difficult.  So for any of you who may be nervous about injectable medication, this is the hardest type of injection to do…and its simple, fast, and not painful.

Training update 1


I worked out with a trainer twice last week as she offers two free visits prior to signing up.

I was super psyched to work out with her as her specialties are postural problems and joint injuries.  I mean, what better match could there be???

Visit 1 involved a lot of benchmarking. She tested flexibility, strength and watched me from every angle to see posturally what I’m doing.  She shared her observations with me, mainly that I favor my right side due to my left ankle problems. No surprise there…but she shared with me that there are things we can do to strengthen the left side to make it more balanced.

Visit 2 was a workout she designed for me.  It was hard but not unmanageable.  We did a lot of strength training using just body weight…of which I have aplenty right now.  Leg lifts, modified push-ups, walking while holding weights up…nothing that I’m incapable of.

It was awesome and I kept catching myself thinking ‘gosh, I miss this!’ 

And then she shared pricing.

Dum, dum, dum.

Totally not doable.  To the tune of $350 per month.  

Totally not doable.

With my trainer in Greensboro, I paid $100 per month.  And he was great.  And also super hot.  Which was motivating.

So…I’m kinda back to the drawing board.  While I’d love to work with her and feel that I’d greatly benefit, I just can’t commit to that number in my budget.

But I also know that I need to resume activity.  I’m mad at myself.  I remember thinking this time last year ‘I can’t believe I’ve seen so much joint mobility difference just from working out and I can never ever lose sight of that.’  And here I am…having fully lost sight of that.

In the short term, I trained with my old trainer online for several months where he’d email me the workouts.  I didn’t like it because I need the accountability of showing to someone.  But it was cheap…much less than even $100 per month.

I still have all of those workouts stored in my email inbox.  I think at least in the interim, I’m going to start back at day one with him and go through the whole series again.  This time, I’ll be taking it more seriously.

Any tips on accountability to actually doing it? That is my biggest struggle.

Getting back into the groove


When I lived in Greensboro, I laughed that I had ‘Team AJ’- a team dedicated to helping me get healthy.  After all, I spent a lot of time there by myself (both willing and unwillingly) and was able to dedicate a significant amount of time to working out and eating right.

I had: a nutritionist, a personal trainer, and a massage therapist.

BUT…I realized after awhile that the closest friends I had there were people that I paid…

 That’s no way to live.

And that factored significantly into my decision to move.

I was the thinnest, healthiest, most unflary version of myself that has ever existed post diagnosis but I was miserable. 

While I was physically doing great, mentally and emotionally, I was in a terrible place.  Between you and me, I’d rather flare a little and not have the people closest to me only be there because they’re on the payroll.

*To be fair, most of those on the payroll have remained there since I moved and they lost their income from me.  But still…it’s a hard thing to realize that the people you’re closest to may only be there for financial reasons…I’m a lucky girl*

Since moving back to Charlotte, I’ve gotten out of my clean eating, super active habits.  I’ve gained the happy 20, and lost some wrist mobility as a result of not consistently working those joints out to build muscle to support them.

I’m admittedly in a weird place.  The girl who usually needs alone time can’t get enough of being around people.  Unfortunately, being around people for me means bars and restaurants.  Spinach artichoke dip at 10pm is not conducive to healthy living.

Honestly, I’m not terribly upset about the weight gain.  Because I was so miserable personally and had no other way to define accomplishments, I took the weight loss/working out a bit too far.

To be clear, I looked like Skeletor for awhile.

And that’s just not a good look for anyone.

But… I was in a weird place in Greebsboro where micro managing my body was the only accomplishment  that I had.  I’m not going to shy away from the fact that I’ve always had a weird relationship with food and emotions…but I will say that in the midst of my unhappy restricting while working with a nutritionist and trainer taught me things about my ability to control my disease that I had never picked up on.

I’m sensitive to gluten, dairy, and soy products. Beans also make me flare a little which is a sad, sad thing for someone who loves black beans and rice as well as veggie burgers.

B12 shots give me much more energy during the day, which helps this insomniac sleep at night.

Soooooo….after hitting a wall last month and realizing that certain joint pains actually feel better when I use them, this RA chick is sending herself back to a trainer.

Unlike last time, I’m going to try to update as I go rather than update as I see results.  It could change but I think I’m going to focus on wrist and ankle mobility as my target areas in addition to weight loss.  

I’m excited because, for cost and motivation reasons, I’ll be sharing a trainer with a good friend.

My first session is tomorrow and for once, I will be completely open and honest about my actual weight and joint abilities.  I’ll also post what we are doing and how I modify activities to keep up with my friend who does not have RA.

Wish me luck! I’m excited!